Prader-Willi Syndrome is known for causing excessive oftentimes life threatening hunger. The Syndrome is caused by a partial chromosome deletion. Coupled with low muscle tone, excessive hunger and lower rate of burning calories Prader-Willi can be very dangerous.
What is not talked about as often is, in many cases, people with Prader-Willi Syndrome may have difficulty with impulse control.
The following is a story that now is humorous to tell. No one was hurt and it turned into a fun story. At the time my wife and I were devastated.
My son A-man went to bed one night several years ago just as he did any other night. He seemed peaceful and compliant. A-man had always been a good sleeper and preferred to go to bed a little early in the evening. This was the quiet time of the day for my wife and I. This was the time we could talk without being interrupted and we could let our guard down knowing A-man was safe in the bed.
My wife and I went to bed late and slept soundly. Around 2 am my cell phone beside the bed began to buzz. I picked it up and with blurry eyes read the text I had just received. A friend that had watched A-man for an hour or so a handful of times had sent me a text. “A-man has Joy’s phone and won’t quit calling me!”
My wife and I sprang out of bed and went to A-man’s room. He did have her phone. He had been calling the young girl that had sent me a text multiple times. To our chagrin A-man had also been calling everyone in my wife’s contacts….multiple times.
To add to our embarrassment there was a phone book in my son’s room. He had been calling restaurants, doctor’s offices, grocery stores, firemen and every other business he could find. Fortunately most of the calls were made from the yellow pages and there was no one at the numbers that late at night. Grandma received several calls at a 3 hour away time zone, so did aunt/uncle and assorted relatives.
It was interesting that with the exception of the baby sitter, every person had the exact same response “DON’T CALL ME IN THE MIDDLE OF THE NIGHT!!” A-man would hang up and dial again sometimes calling the same person back a 2nd or 3rd time.
The baby sitter was the only one that had a slightly different take on the situation. She said “A-man, is your mom or dad awake? I want you to hang up the phone and go to sleep. Don’t call me in the middle of the night.” Then she sent me a text.
I had, for one of my books, posted an ad on Craigslist for an illustrator. A response came from a young man but I was surprised to find out he lived in Romania. I had been in contact with the young man for some time before the phone incident and the young Romanian had done small jobs for me here and there.
I decided to write about the incident but in a humorous way. No one was hurt in the end though my wife was truly mortified. My friend from Romania said he would illustrate the book for me.
The True story is that people were not that upset and some even thought it was funny. In the book, however, a crowd of people come knocking on the door of A-man’s house in the morning demanding all at once “DON’T CALL ME IN THE MIDDLE OF THE NIGHT!”
In reality A-man was in trouble and had to be closely supervised around phones for a long time. In the book A-man is a younger child, apologizes to all the angry/sleepy people and finally gets a ride in a fire truck. As my wife points out a firetruck ride would be encouraging a negative behavior and we don’t want to do that in real life.
As I pointed out to her, that is true, but there are also dragons, monsters and many happy endings in stories as well that just make books more interesting.
People that have trouble with impulse control, can put themselves in a dangerous situation quickly. Parents have to be on guard 24 hours a day and be alert of where the person is and what is being done every minute. Sometimes special alarms, locks and extra supervision are required.
If you have someone you love that you would like to share a story about please contact Techdadz through the discus comment section below or feel free to email at [email protected]
**this story is also available in Russian and Romanian translations.